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~~~

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Check this website and others frequently for updated information.

Text
Ó 2006 Olive Kaiser
Gluten Sensitivity.net

~~~

I am a patient, not a medical expert, but share with others information
that I have personally found helpful.

If you are experiencing serious issues that may
be related to gluten withdrawal, gluten challenges, etc., and cannot find help, contact
this website by email
info@glutensensitivity.net AND
jka8168@sbcglobal.net or
call 630-628-9126 or 630-808-2079 cell. We will refer practitioners
who are familiar with these types of transitions and other informational
resources.

Why do these reactions happen? These reactions
are not well understood but often gluteomorphin withdrawal is suspected if
a reaction is noted upon initial withdrawal of gluten.
Go to theories and research.

UPDATE: March 12, 2009

Here is an update including
links to forum searches concerning initial adverse reactions

This reaction is very uncommon, but a
few patients (adults) have experienced depression or crying spells
at the start of the gluten free diet, or shortly into the diet,
usually by 2-4 weeks.
The reaction has been severe in a few cases. In the case of
children, behavior may significantly worsen for a time. This
reaction is more frequently seen in autism circles. Firsthand
accounts indicate that this appears to resolve eventually and the
patient usually does well once this initial reaction is over if the
gluten free diet is strictly maintained.

It is speculated that the "withdrawal"
type symptoms are due to the removal of certain types of gluten
or milk "pieces" that have an drug like "opiod" structure, similar to
opiates. They affect the brain in such a way that their removal
triggers an apparently temporary
reaction that resembles drug
or alcohol withdrawal. The pieces of gluten (or milk) are
called
gluteomorphins (or sometimes called
gliadorphins) and casomorphins (milk).

Speculation regarding reduced blood
flow when gluten is consumed and increased "normalized" blood flow
when gluten is removed is another phenomenon some professionals
suggest. It is known that in some situations such as
hypothermia or heart events, tissue damage may be inflicted when
previously constricted blood flow returns to normal. At this time there are no researched answers.
This phenomenon is not well known or well studied.

In one such reaction a
older senior in frail health unsuccessfully attempted suicide.
The patient continued the diet and once the reaction abated, the
patient improved dramatically compared to his condition before the
diet was implemented and was able to enjoy golfing again, for
example.

Another case is on record in which
a number of factors muddy the picture somewhat. A gluten positive
testing adult
patient removed several foods that are cross reactive with gluten.
Several
months later she also removed gluten. At some point she also
discontinued an antidepressant possibly too quickly. A month
after going gluten free, in the autumn, a month long crying spell reaction
occurred which also coincided with the seasonal
affective disorder season. (Interestingly her sister in another
state crashed similarly. Neither of the women were able to work but
a medication change eventually put her sister back on track.) Two weeks into the crying spell
the patient resumed consumption of gluten
and attempted to control
the situation with medications. The patient's already fragile
mental and emotional condition visibly appeared to dramatically
worsen, including emergency room visits and watchful attendance by
family members. Friends reported the patient was difficult to
communicate with due to confusion and her appearance suggested
her mental disturbance. After several months of medication trials, she stabilized
somewhat and over several more months gradually improved enough ease back to her job.
She appears to be on a normal gluten containing diet, and
specifically consumes oatmeal daily. She continues to cycle
down frequently and is now diagnosed with bipolar illness, although
the "highs" of bipolar are not observed by others.

This website encourages further research on this rare phenomenon and how to manage it.

Other reactions may occur if diabetic
routines, thyroid medications or other treatments need adjustment once the gluten free
diet is established.

Occasionally blood
sugar management becomes an issue upon initial removal of gluten.
We have had cases of this phenomenon the very first day a well
regulated diabetic patient went totally gluten free, even though the
carbs were correctly compensated with naturally gluten free foods.

Professional care from practitioners
who understand the gluten syndrome is strongly advised in these
situations.

While these reactions are quite rare,
this website is looking for firsthand accounts of significant
adverse reactions to the gluten free diet, both initial reactions
and gluten challenge or serious "cheating " reactions in order to
present the information to the research community. Email
jka8168@sbcglobal.net or call 630-628-9126.

A collection of these reactions is
found on the Adverse Reaction page of this site.

Below is a summary of
responses received to the following post on the ICORS celiac list,
December 2007. Thanks to all who generously contributed their
experiences and time during a busy holiday season.

Here is the original
question

Hi group,

Does anyone have experiences or research that indicate possible adverse
reactions to going gluten free?

I am aware, painfully, of bad reactions from going gluten free and then
going back to gluten either as a gluten challenge or
indiscretions and going on and off the diet.

My question is about just going gluten free to begin with, particularly
emotional/depression/psychological issues, but I include any negative
reaction in my question.

Any adverse combinations of other treatments simultaneous to starting the
GF diet?

I add this response after
a conversation with a well known and very experienced, knowledgeable
person with diagnosed celiac disease (the villi damaged subset).
Here are his comments summarized.

"The gluteomorphins (opiods)
create an addictive opiate like response in the brain. This is known
through research. When gluten is removed from the diet, and the
gluteomorphins dissipate, the effect may be similar to withdrawal from
alcohol or other addictive substances. I know because I am an
alcoholic. I have been dry for 26 years. I recognize the
strong similarity between the discontinuance of alcohol and the
discontinuance of gluten."

December 2007

My (then) three year old
daughter seemed to "get worse" for about one month after going gf. She
seemed to experience more pain and distress, and she had terrible,
uncontrollable tantrums. (for example - she managed to get herself out of
her car seat while we were driving, and once on a flight my husband and I
between the two of us could not keep her buckled in her seat. We had to
put her on the floor of the airplane and I laid down on top of her as the
plane took off - it was a nightmare). after approx. one month gf we saw a
marked improvement - first in her mood and behavior. It took longer before
her gi symptoms got better and she resumed growing. Hope this info is
helpful, Lynn

Thank you so much for
sharing. Knowing of your daughter's severe reaction is very helpful to us.
And also that it resolved in time. Did you find any strategies that you
thought helped her through it?

Yes –I had to find a way to calm her – bubble baths
and soft lighting and music seemed to help calm her. Then I would give
her a little pepto bismol if she was complaining of pain, or feed her
very simple food such as plain white rice or yogurt.

My son – who is also celiac – was helped more by
distraction when he had pain – we would put him in front of an engrossing
movie and also give him either some pepto bismol or some very simple foods.

My daughter is now 14 and completely healthy and
normal in every way – it took her about 2 + years to fully recover after
going gf

~~~

I suppose the only people who
will Email you are those who had some sort of bad reaction. The only bad
reaction I had was when I tasted GF bread for the first time. Ugh. Now I
bake my own.

I began to feel stronger and
more alert within two weeks of going GF. I went from being someone who had
to take two naps a day to hiking to the bottom of the Grand Canyon and
back up the same day.

~~~

There is often depression
associated with a new diagnosis of a chronic illness, and also
anxiety/depression/anger/hostility/resentment can affect both the newly GF
and their family/friends. The GF can be very hard to adapt to, and can be
viewed as a horrible burden by many.

~~~

I believe, if I remember
correctly, I mostly experienced a period of grief at the loss of all the
good things I could never eat again. Also, I expected to recover almost
immediately, and looking back, it too years. Things I learned along the
way: B-12 stopped the pain in my joints and I quit feeling 90 years old
almost immediately. Omega 3 helped lift the depression.

Presently, I am in the
clinical trial with Alba Therapies for the celiac drug. Honestly, I feel
wonderful. This drug seems to stop the inflammations that have plagued me
even after diagnosis.

I hope this isn't to much
information that you don't need. It is a microcosm of my journey.

I wish you the best, (gluten
free 5 years)

~~~

Was excited @ first to
finally be diagnosed as have had problems for years and was relieved to
finally know how to "start feeling better"- then became increasingly
stressed (frustrated) in learning "what is ok to eat." Still have my
days of feeling down-in-the dumps as the diet is difficult to cook when
another family member wants regular food and doesn't always understand.
And, of course, when I'm really tired - but take a nap and wake up feeling
ready to start fresh. So - depression is as bad as it gets for me.

Also, find a Celiac Support
group in your area, see a dietitian, and find Natural Food store(s) in
your area - we have one in town that is 10 minutes drive away - they have
a whole section in freezers and also in pkg mixes to pasta, etc. Remember,
eating fresh vegetables and fresh fruits help fill the gap. Everyone's
reaction to foods is different. Hang in there!

~~~

I think what happens is a
reaction to a lot of the non-gluten free grains/seeds, etc....I cannot
tolerate most of the stuff. If you happen to have calcium deposits in your
body and are reactive to oxalates, you can really mess yourself up by
eating buckwheat and a lot of other so called healthy foods. I highly
recommend the Low Oxalate Cookbook --for the oxalate info--not the recipes
if you think oxalates might be a problem. Lots of info on the net
about oxalates, but the cookbook is the best source of essential info. You
have to consider other possibilities---not just getting stuck on
identifying every molecule of gluten on the planet. Good luck.

~~~

I have heard that people can
feel worse when they first go gluten free. This can last from a few days
to a few weeks - sort of like a detox reaction? I know when I went gluten
free I felt much worse for the first 3 days and then on day 4 I started
noticing the first of many positive changes - I noticed my knees stopped
hurting. If I had not been warned about the "worse before getting better"
reaction, I might have given up on day 2.

~~~

weight gain!

~~~

I really don't remember
exactly how I was feeling worse - at the time I went GF, 4 years ago, I
felt so bad I thought I was dying. Fatigue and depression were two of my
many symptoms.

I don't remember crying - but
then, I have never cried much. I hold it all inside - that is a good
solution, HA! All I remember now is that it felt worse for the first few
days when I gave up gluten. I probably would be dead by now if I had not
gone GF. I did not have GI symptoms other than reflux.

~~~

When my daughter and I had to
go gluten free we both were eating a lot more than normal. So much so,
that I called the doctor. We just couldn't get full. He told me it was our
bodies' way of catching up
on all of the lost nutrients. It leveled out after a few months.

~~~

Many people will feel
depression or almost a sense of grieving over having lost their best
friend "eating as they knew it". I think this happens more often in people
that did not have severe complications and had the joy of feeling like a
new human after on the GF diet for only a few days, or of not spending
hours in the john or afraid to even go out without knowing where the
nearest lav is. Those people are overjoyed at finding out their cure is
just eating a healthy diet. For those not so afflicted, it can be
upsetting. Also,
college students have a very difficult time emotionally. Their diet
consists of pizza and beer and late night socialization with nothing to
eat and peer groups who don't understand. I think they find it very
difficult to maintain a strict GF diet and then the problems compound
again with fatigue, feeling ill, rejection, a feeling of loss, etc.

~~~

I believe in his book,
Dangerous Grains, Dr. Ron Hoggan mentions that gluten can act as an opiate
on the digestive system. When one removes it from their diet, they can
experience a period of withdrawal which can entail some irritability. I
did experience some mood swings once I eliminated gluten but I have never
regretted it! It does require perseverance so be patient with yourself as
your body adjusts but it is worth the temporary inconvenience. Good luck
and take care.

~~~

Yes, this is common. There
was a thread on the list about this a few months back. It seems that most
of us have some kind of negative reaction. My problem was mainly with
vomiting. Others reported other physical and emotional issues. The
problems clear up within a few weeks to a few months.

~~~

Going gluten-free means:

It took me 10 years to figure out why the same thing happened to me.
With the gluten-free diet, you are no longer eating *fortified*
cereals/breads, which means you are experiencing a reduction in dietary:

So, if you can, find a supplement that contains:
iron (15-20mg) and B complex (10-20 mg for each of the B vitamins)

Also: Calcium, magnesium, vitamin D are important if you are limiting
dairy intake.

~~~

While your body is ridding
itself of toxins, and trying to heal the villi, you usually do not feel so
hot. It can take a year or two to feel better and see a difference.
Depends on how young you are and how long you had CD. People who are older
may not entirely heal, some do.

~~~

I would imagine most people
going gluten free have emotional/psychological effects, particularly those
who must go GF but never had bad symptoms. You are suddenly different from
most people, you are suddenly sort of sick and at higher risk for some
diseases. Also, it is a loss -- a loss you are angry about and must
grieve. The loss includes gluten-containing foods, and also all
spontaneity. Every social gathering or outing of any sort is a big hassle
-- phone calls, special arrangements, making your own food, having the
talk center around the fact you are or are not eating something.

When my 14yo (now 15) son was diagnosed, he had/has some depression and
anxiety about being different from other kids, how he was going to deal
with social gatherings, band trips, school lunch, college. I think it is a
lot worse for kids than adults, who have learned not to care what others
think or say, and who have a much greater degree of control over what they
do. (My son had no symptoms.)

I have read research consistent with what I have personally
seen/experienced -- you could probably find some on celiac.com. I even
read a study that found that the mortality rate of kids diagnosed with
celiac is much higher than expected, due to higher suicides and accidents.
I think that study is on celiac.com, but if not you could probably find it
by googling.

Good points, I've wondered if
the suicide rates with kids are related to cheating and mistake induced
depressions as well or more so than the social issues. My daughter went
into a severe depression when she did a gluten challenge. But she didn't
experience the severe depression originally. Thanks so much for your
reply.

~~~

Your body can actually set up
an addiction to gluten. Why - i don't know. the adverse reactions you
described are those associated with withdrawal.

~~~

I have been constipated after
going gluten-free, otherwise my digestive system has improved, especially
in the reduction of reflux. I have only been on this new and third
restrictive diet for a month but I am a believer and I resisted a chance
to cheat, a Christmas cake that I paid thirty-six dollars for.

Ok, I've heard of
constipation before. Any ideas on why and how you resolved it or did it
just resolve itself in time. Also did you substitute the gluten with the
typical higher carb/sugar substitutes? Thanks so much for your reply?

No reply to this second
question yet. Will post if a reply is received.

~~~

It could
be that in going g.f. you are adding more of something else (non-gluten)
that wasn't a problem before because 1) you immune system was overwhelmed
by the gluten, or 2) you weren't eating very much of it before...could be
almost anything. Obvious are corn, milk, soy. Less likely but possible,
are rice, tapioca.

Bean flours are not all created equal. The Eat Right for Your Type book
lists about 2 dozen different types of beans but there's an assortment
that's not good for each particular blood type.

Potatoes & potato starch in particular can also be the culprit.. I'm a
Type O so when the book suggest white potatoes could be a problem I was
skeptical but decided to go potato free for a couple of weeks. In less
than I week the pain on the outside of my bones was gone...I'd been
starting my day w 3 ibuprofen for that pain for years. The pain I get
from a large baked potato is equal to 1 Tbs. or less of potato starch.
Giving up potatoes was harder than going g.f. but I don't miss the daily
inflammation & pain. I do pass on most g.f. products as well because the
potato starch has such a potent effect.

You have to be your own detective. Attached is a
copy of
something I put in our NL a few years back. It gives info on food diary &
other resource. Enjoy!

~~~

It's been a long time but I
noticed positive changes immediately. They were so dramatic that my doctor
recommended going gluten free without the biopsy since it was before the
blood tests were developed.

That's great. You might not have had villi damage
anyway. A lot of people don't but they are damaged in some other important
places in their bodies. The villi gold standard dx is very misleading for
those who have the (serious and also autoimmune) intolerance reaction.
Thanks for your reply.

~~~

Many of us try to replace
gluten with sugar. The result is “Candida Albicans". You'll find many
articles on the internet about it and how to cure it. Have Happy
holidays!

~~~

Going GF was a "mixed bag"
for me. There was both a miracle & a downside. The miracle was
complete amelioration of lifelong (50 yrs.) of severe constipation & IBS.
The IBS was of such severity that I had had 3 hospitalizations for it
alone, over the decades.

But you asked about the adverse reactions/downsides of going GF. I
did suffer increased joint pain & swelling, as well as muscle pain, my
first couple of yrs. GF. It took me a while to consider that it
might be something to do with GF diet. Note, I did have arthritis
pre-exisiting GFD. But it got sig. worse. Anyway, turns out I
am nightshade sensitive in addition to being gluten intolerant. We
had done the GFD
as a family & tried to make it interesting for our celiac &
gluten-allergic (IgE) teens. That meant increasing spicy ethnic
dishes, which they love. So lots more of every sort of pepper than
pre-GFD. Lots more potato & tomato, too. I would estimate that
my personal potato consumption tripled on GFD. That incl. potato
starch used in baking. Tomato doubled, and pepper intake quadrupled.

A nightshade-free diet trial (in addition to GFD) with subsequent
challenges of nightshade foods (potato, tomato, bell & spicy peppers along
with their related spices), eggplant) confirmed that the nightshades were
responsible for the increased joint pain. Before the
NF trial, during the trial & also the challenges, I scored every
sore joint in my body on a 0-5 scale for pain, redness & swelling.
Thus I had a baseline of "grand totals" for each segment.
Nightshades roughly double my joint pain scores, which is a combination of
factors incl. severity & number of joints affected.

The nightshade issue is not an allergy, but some "other" type of
sensitivity. I have done both IgE & IgG testing for nightshades (&
gluten also) & do not have antibodies.

In a sort of backward way, the GF diet helped me discover the NF
sensitivity, but first I did go through a very painful period. To this day
I am GF, NF, DF & EF.

Good luck with your research. I do enjoy the Gluten Sensitivity
site. It is often mentioned at our local GIG meetings as a resource to
help explain things to newbies. Best wishes.

~~~

Yes, feel free to post
my withdrawal symptoms to your website. You may want to add them in the
following order:

Overwhelming fatigue Website
note: (described to me as "couldn't get out of bed")

Brain Fog (this included lack of mental clarity;
uncharacteristic forgetfulness, i.e. being unable to remember common
words and to remember something I just did, like putting dinner away;
and tongue-tiedness.)

Black-pit depression

Acute anxiety

Shaking, feeling famished, and dizziness at meal
times and needing to eat on the spot (this symptom resolved itself
within a few days)

One instance of throat
closing up (felt like I was having an allergic reaction)

The withdrawal symptoms began on the fourth night of
my gluten-free diet, and lasted for just over 2 weeks.

~~~

Wheat Harvest

Website readers are
invited to comment or contribute their experiences. Send email to
info@glutensensitivity.net or jka8168@sbcglobal.net

Can gluten syndrome
folks who are in close proximity to wheat harvest please give us a heads
up on that situation?

If they are
affected and how/symptoms?

If they have tested their antibody levels, or other
markers during that time?

How they managed
their lives? What worked to minimize exposure and symptoms?

Looking at all
symptoms but particularly neurological, depression, general debilitation.

Thanks folks, I'll
summarize.

Here is the current event that prompted
this question

A 26 year old man, the baby born when his
mother was triggered for gluten syndrome by an emergency C-Section, is so
reactive to gluten that even touching gluten to his mouth brings on a
reaction. Going GF helped him immensely and he is very very strict.

He lives in a heavy wheat producing area of
Washington state. The haze of harvest in the valley is visible from the
mountains nearby.

He went GF in April, 08, 16 months ago, and
got through wheat harvest without noticeable incident last summer.

This year he crashed majorly, coinciding
with wheat harvest. He couldn't work although he tried, he often had
trouble sleeping and then getting up and going in the morning. He was
in a miserable black pit of a strange serious depression, couldn't handle
anything, no decisions, stress, snappy/touchy/tortured, anything is too
much. This is not typical of him.

He couldn't seem to talk about it, not
even withn his cousin Su who has experienced this, see her
story. Su agreed with him. She commented,
"There is nothing to talk about. You just want to get well." This has
been true of everyone who has experienced this depression.

His mother also experienced these atypical
crashes when she has had a gluten accident. She had a hard time
keeping going last year at harvest time but didn't connect the dots until
this year. However, it was difficult enough that she worked very
hard on her nutritional profile last fall under the care of two functional
medicine dr’s, Dr. Thomas O’Bryan of Chicago and a Dr. Moore in Washington
state. She appears to not be so reactive now. This year's harvest
did not bother her much.

It has been suggested that strategies to
heal the gut be the focus, including a diet and and environment of toxins
and processed food, and addition of healing bone broths, sauerkraut,
natural fats such as coconut, palm oil, and cod liver oil, casein free
butter, and pastured animal fat, etc. to improve a gut that is too
permeable. www.westonaprice.org

Does anyone have
any other suggestions.

~~~~~~~~~

I must avoid being
outside during gluten harvestings and I also react to harvesting hay. Not
sure if that is due to crop rotation using glutens on the same ground or
whether it is a separate issue. But it causes me the same symptoms. I
get sore throat, scratchy achey eyes, mucus proliferation and asthma
attack (sometimes this turns into
bronchitis), headache, digestive problems of all types including diarrhea,
and neuro symptoms. Sometimes I do not have all these symptoms. I can
sometimes just have sore throat, breathing difficulty instead of asthma,
upset stomach instead of all digestive complaints, and neuro symptoms, for
instance. Sometimes even fewer symptoms than that. and often when I am
affected I do feel debilitated for a month or more.

~~

I have never had or
sought testing. I cope by staying inside and going for rides to a lake,
river, or state park to get some fresh air. I run my car on max-a/c
instead of regular a/c. That way the air outside the car doesn't enter
the car. I change the setting when I am 5 or so miles away from farming
country.

~~

I read a
research article 2 years or so ago which stated unresponsive celiac was
often caused by airborne glutens and esp caused neuro symptoms,
depression, and general debilitation. I doubt I could find it now, but it
was from here at the forum and was released in June or July, I think.
probably 2007, 2006, or 2005. They mentioned farmers as often affected by
feeding their livestock, for instance.

~~

I have clients who
experience the same thing in Kansas. It is likely a real thing. He may
need to leave town during that time??

Dr. Ken (Fine)

~~

I'm living on
Vancouver Island now, but when in Calgary I had asthma attacks when I
drove past a working combine unless I put the air conditioning on
"re-circulate" I often have breathing problems if I'm around airborne
gluten.

Ron Hoggan

~~

I moved to wheat country
last year. I can provide an update on symptoms within the next month or
so, as they begin harvesting. I'm also allergic to all of the grasses in
the standard allergy tests, so last fall I struggled a lot, but I wasn't
sure if it was just inhaling the wheat particles or if I was suffering
from cross-contamination.

~~

I live in farm country
in western Maryland. There are wheat fields all about. Different
harvests have caused some or no problems. If the wind is high and I am
home when the harvesting is done, I may experience loose stools for the
duration of the harvest and a few days after. I've never had my
antibodies checked. Some harvests, when there is no wind, seem to not
cause much problem. Also the amount of moisture in the air seems to keep
it down some.

~~

I don't know about
gluten but it is certainly feasible. We lived for many years next to a
corn field and when the corn was in bloom the pollen drove my husband nuts
with seasonal allergy. He is corn allergic as a food so other aspects of
the plant must other him too. I also have an asthmatic friend who is corn
allergic, and Kathleen said when she was growing up they used to ride in
the wagon when they were chopping cornstalks for animal fodder and the
dust from the stalks always sent her into asthma attack, so I think it is
certainly feasible. Hope you get some answers about wheat.

~~

I live in a rural
village and did not even notice the wheat harvest this year, rye and
barley are the same. As a child it was a terrible time for me but since
going GF I can even walk thru a wheat field and not notice. Not all, but
most of them.

~~

I
live in a small farm town. Most of the farmers are dairy, but there's some
wheat fields & a grainery nearby & I noticed that during harvesting
season, I'm usually in the bathroom a lot more.

Research that may
apply to adverse reactions to the GF diet. Reperfusion injury and
Gluteomorphin withdrawal theories.

Hypoperfusion and Ischemia Reperfusion injury theory

1. Hypoperfusion and
ischemia/reperfusion injury:Note: this this only a
suggestion

hypoperfusion - (hypo
- less than quantity than normal) perfusion (the passage of a fluid
through the vessels of a specific organ)

This phenomenon can be
compared to power surges that occur after electricity is reduced or cut
off in a blackout or brownout. We run around and turn off our
computers, microwaves, and sensitive equipment to protect them from
damaging surges when electricity is restored.